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Old 02-27-2013, 04:38 PM
StrongerMan StrongerMan is offline
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Join Date: Feb 2013
Location: South Eastern PA
Posts: 18
10 yr Member
StrongerMan StrongerMan is offline
n/a
 
Join Date: Feb 2013
Location: South Eastern PA
Posts: 18
10 yr Member
Default Many symptoms but no diagnosis yet :(

Hello all,

It doesn't seem like I have ability to upload pics on my profile page yet.. since I am new? Well, I am posting here due to the fact that I have neck pain and many of my symptoms could be a result of either a vertebral or soft tissue injury or both in my cervical spine. I am sorry if this rambles as I have had so many symptoms over the course of the past almost 6 months. My past health history includes a work related L4-L5 moderate disc herniation in late 2010. An MRI also showed mild degenerative disc disease. I had 2 epidurals and a nucleoplasty and that injury has stabilized without the need for surgery (at least so far).

My symptoms started with moderate on and off neck pain that started early last summer. I had fallen off my bike hard twice to the side the summer before but had no pain. I confess to being a self manipulator (cracking my neck) for many years.. I'm 44 and suspect this may have set me up for later trouble. Anyway, one morning I awoke with a bad crick in my neck from what I presumed was sleeping on the couch with my neck at a bad angle. It got better but I always had soreness. Later on last summer I noticed a loss in range of motion and felt a sharp pain when turning my head to the left side. The pain and stiffness seemed to be mainly on the left side. I also had a slight shooting pain down into my shoulder if I turned my head sharply down and to the left. I figured this would all subside on its own with time.

This was my only issue until late last summer into early fall when all hell broke loose. I began experiencing dysphagia mainly with solids. It would occur seldomly at first (every few days) but progressed into my only taking soft foods and liquids. The dysphagia seemed to subside after sleep but come on later in the day. A swallow study was done but was normal. Of course I had it in the a.m. before it would kick in. Around early fall I started to get muscle twitches in my face and upper extremities and progressing into my legs. I also had what I can only describe as restless leg syndrome which I have never had before as well as tingling or pins and needles. This was very disconcerting for me and my anxiety only got worse. Not long thereafter I started to experience numbness and burning in my tongue and numbness in my face.. left side for both. This only lasted 2 weeks.

Another transient symptom was tinnitus which was not a ringing but more like a tick tick tick sound. Along with this was a fullness in the left side of my head like sinus pressure or being in a plane at altitude. These symptoms mostly subsided after a couple of weeks. I did not have insurance at the time so I was trying to figure this all out on my own. Since I also had fatigue, sensitivity to cold, shortness of breath and intolerance to exercise as well, I suspected thyroid or a nutrient deficiency. Subsequent blood tests indicated normal ranges for TSH, electrolytes, iron etc...

Meanwhile, my symptoms expanded with an achy, heavy feeling and loss of dexterity in my right arm and hand. I also had twitching in my arm and hands that would cause my fingers to have tremors. The twitching in my leg began to mainly affect the left calf and shin although I could have twitching all over my body. Things progressed in my legs more with what seems like myelopathy... achy, heavy, spastic feeling in legs that affects my walking and balance. I also have sciatic nerve sensitivity but not really pain. I can feel my hip tugging when I wiggle my left big toe. This leg stuff all comes and goes and usually comes in the evening and is with me when waking. I test my strength during these bouts and it seems normal. Much of this seems to coincide with a increase in pain and heaviness in my neck and recently a numbness again in my left side of head, jaw and lips. I have hyper-reflexia in my legs and my knee jumps like crazy now when the dr. hits it. It was always good, but not like this. The twitching in my left leg moved into my foot and often seems like popcorn is popping under my skin along with tingling and buzzing sensations. Also my arm symptoms are felt in both arms but this also comes and goes.

After a 3 week period of relief from the dysphagia, it came back worse in mid January to the point where I would lose the total ability to swallow solids or even liquids for short periods. It is oropharangeal meaning it doesn't seem to involve my esophagus. I overcame my fear of choking (aspirating) with this last bout and learned to relax and either hold the food til it cleared or spit and cough it up. This way I could manage to consume a wider variety of foods and keep my weight up. The past 3 weeks have seen the dysphagia subside again to near normal although I do have a slight hesitation at times. I have declined another swallow study since I don't have confidence they will test me when I am having trouble.

Once I got insurance I began some serious testing. I was scheduled for a brain MRI 1/4 which came back normal and a cervical mri 1/29 that they also said was clear apart from "muscle spasms". An EMG of my legs was normal. They advised me to see an orthopedist but I decided to just wait for my neuro appt. and have her refer me. The neurologist concurred that my tests were normal. She could see the twitching in my left shin but I passed the other tests. She sent me for bloodwork for copper, ceruloplasm and heavy metals. I have yet to hear back on those. I also will have an arm EMG in April. My followup with her is an excruciating 4 months away. I have since reviewed my neck mri on my own and do see what looks like a compression and herniation at c5-c6 that appears to press into the thecal sac and slightly indent the spinal cord. On one image there appears to be a bone spur with a clear view of the herniation . I have read and seen images that recommend an upright mri with load vs. recumbent for the neck as the loading of the spine in the latter can reveal stenosis not visible in the former. I also have a loss of lordosis which may explain the muscle spasm finding.

Well, this is where I am right now. No one can seem to give me any direction with this and that leaves me in this state of limbo. I feel they are dragging their feet because they think it is anxiety or depression related or something and I don't seem to be suffering all that much. But this is a nightmare.
I certainly have had bad anxiety and depression due to all these scary symptoms. But I am way way past considering anything psychological. I don't know my best course of action. I am thinking of switching to a neurologist or neurosurgeon experienced in the spine and pushing for the upright mri. My dysphagia and other head and facial symptoms seem cranial nerve related of course. I have read tons on whiplash syndrome or cervical sympathetic syndrome causing all that. Maybe my bike falls sprained a ligament or cause some instability or subluxation in the upper cervical that is to blame. The neck pain is real enough but there must be multiple things going on. The only other factor, for my lower body that is, is I do have more lumbar pain returning in the area of my previous back injury. Could this be compounding the neck symptoms and nerve abnormalities in my left leg?

If my brain mri is normal, I have normal muscle strength for the most part, no atrophy other than normal due to recent inactivity and no other signs of neurological disease, what can I do? I cannot continue on like this without an answer indefinitely. I am not working at the moment and was taking classes before this started. I do have some money saved up so I am not hurting financially at the moment. But I don't want to eat into my savings for very long at all. Luckily, I don't have many financial responsibilities right now. I get no sleep many nights with the twitching, aching and worrying and don't want to go back on any benzos. I take passion flower and melatonin and skelaxin (muscle relaxer) here and there. No other meds. This is taking a toll on me mentally.
I can't really seek employment until I get this all figured out and concentrating/studying for a class is not realistic right now either. I can't partake in physical activities I enjoy. I feel incredibly stuck. Am I just being a wimp and should I be able to forge through this? Of course that would be a little easier with a diagnosis. But nobody seems to be in a hurry. I left a message with the neuro office and they say they will get back to me within 24 hours. You'd think I was calling about a common cold.

As for speculation, I am not looking for any diagnosis here.. per say.. at least not one with any trigger maladies (and we all know which one in particular I mean). Well, I know most of you know the deal anyway. But I welcome comments from anyone who has suffered similarly or has any advice on how to best handle this. I have posted my neck mri on PsychCentral under the same username.. strongerman... for simplicity's sake. They are digipics off my pc but I think they adequately show the disc in question. Maybe someone can take a look and tell me what they think. I will keep trying to upload them to this site.

Again, thank you for bearing with me,

All the best,
StrongerMan
StrongerMan is offline